NEWBIE NEEDS HELP UNDERSTAND IGENEX RESULTS

[momoflivy]

Hi, I am brand new here and to Lyme. My dd was dx with PANDAS and got testing done for Lyme and co-infections and I am trying to figure out the results. I just want to know if anyone thinks the test results warrant seeing seeing a dr. who specializes in lyme (we are already seeing DAN dr. for asperger's and dr. for PANDAS, just don't want to add another dr. appointment/fee if it is not necessary).

 

IGenex Test results are as follows:

 

Lyme IgM Western Blot:

39 KDa IND

41 KDa +

all others were -

 

 

Lyme IgG Western Blot:

41 KDa+++ (3 pluses)

all others were -

 

HME Panel Test (monocytic)

E. chaffeensis IgM 1:40 titer

E. chaffeensis IgG 1:80 titer

 

B. hensalae IFA (G/M) Test

B. henselae IGM <1:20 Titer

B. henselae IgG 1:160 Titer

 

Any help interpreting these results would be greatly appreciated! Thank you.

[LNN]

It doesn't scream lyme but it suggests your daughter has crossed paths with lyme. Lyme lab tests are less than conclusive for many reasons. (under the helpful threads of this forum are a few articles that discuss why).

 

My daughter had similar results. We spent a number of months ruling other things out (parasites, h pylori, gut imbalance, celiacs, yeast). DD also had a number of Pandas symptoms, including high inflammation markers and extremely high immune complexes that had been rising for a year. So we knew she was fighting an infection, we just didn't have test results that screamed the answer at us. Her strep titers were negative and she had no recent illness. So did we put faith in an ambiguous Igenex result and pursue lyme or dismiss negative strep titers and pursue Pandas? Many of the parents on this forum will tell you that in our small subset of kids, Pandas and tick-borne illnesses look nearly identical. So clinically, DD could've been diagnosed with either.

 

For us, it came down to this: if she had lyme and we followed a Pandas protocol, she might never get completely well. If we followed a lyme protocol and she really had Pandas, chances were still good that she'd respond and go into remission. It felt like lyme treatment was a better bet for her. So far, it's been the right choice for us.

[MichaelTampa]

Similar results to mine and lyme treatment has been the magic answer for me that unfortunately took decades to find. The band 39, based on a survey of population with and without diagnosed lyme, is the most specific for lyme of all the bands, whereas band 41 is the least specific. The IND for 39 is saying a lot.

[ksole]

did you test for coinfections? My son's igenex test showed him positive for a coinfection that had I not tested would have gone unaddressed.

[sf_mom]

It also looks like you have titers for both Bartonella and Ehrlichiosis.... two co-infections to LD. I would definitely meet with an LLMD next.

[momoflivy]

Thanks for your replies and info. I am going to schedule an appointment for my daughter with an LLMD to see what I can find out.

[sf_mom]

I noticed from the PANDAS forum you are currently doing month long steroid taper and DD is worse. I am not sure who your PANDAS Dr. is but with the current co-infection results it might be beneficial to taper off steroids. I would contact your Dr. in the morning to develop a plan. If chronic infection present you are potentially giving the infection a leg up with steroids.

 

-Wendy

[momoflivy]

I noticed from the PANDAS forum you are currently doing month long steroid taper and DD is worse. I am not sure who your PANDAS Dr. is but with the current co-infection results it might be beneficial to taper off steroids. I would contact your Dr. in the morning to develop a plan. If chronic infection present you are potentially giving the infection a leg up with steroids.

 

-Wendy

 

 

Hi Wendy:

 

Thank you so much for alerting me to this potential problem. I am going to contact her PANDAS dr. first thing tomorrow morning. We have 4 days left of the steroid taper. I hope that it hasn't done more harm than good.

 

Mindy